Remember how I said last week that Beth considers "success" to be a score of 80% or higher on AZ Bios at 50 decibels? Well, we have achieved SUCCESS! At only 3 weeks post-activation!!! Today Brandt scored 83%. EIGHTY-THREE. I am completely blown away. Even more impressive, I think, was his CNC scores--64% on total words (versus 38% last week and 8% pre-CI [at 10dB louder]) and 81% on phonemes (versus 65% last week and 31% pre-CI [at 10dB louder]).
This is just mind-boggling. Ariel was beyond thrilled and said she didn't need to meet with us anymore because he's doing so great. I was rather conflicted about that, I thought we were going to be coming in for months and months for therapy and instead we're told that we don't need her anymore!
A few anecdotes from Brandt on his success:
Our girl-cat jumped up in his lap and started purring loudly. I asked if he could hear it and he nodded. "So how long has it been since you heard a cat purr? 20 years at least?" I asked. "I'm actually not sure if I've ever heard a cat purr before..." he responded.
On the difference between his implanted and aided ear: "My left [aided] ear is so uncomfortable. The canal is hot and itchy, the sound is soft and muffled. Compare it to my right [implanted] ear, which is loud and clear, and doesn't hurt at all. The CI side is so much better."
He has been able to listen to NPR in the car for the first time in a year. He's always hated music but used to listen to NPR, particularly "Car Talk" and "The Diane Rehm Show," but had to give up on it because he was struggling too much.
On watching TV being bimodal: "I like being able to watch Star Trek in stereo! Now I have one ear for dialogue, and one for sound effects!"
Friday, October 31, 2014
Thursday, October 23, 2014
2 Weeks Post-Activation
Last night's speech therapy was beyond impressive. Brandt only missed one of the Ling-6 sounds (he thought I said "oo" instead of "mm"--it's always been his most-missed sound) and I recited them three times, so he got a 94%! For the first vowel word list (kin, keen, cane, can, con, coon, kern, coin, kine), he got EVERY SINGLE ONE RIGHT! And I repeated them all several times. I decided to try a second list (high, hoe, hay, how, who, huh, ha, he, hoy, her) and he only missed one--huh and ha sounded the same at first.
On the list of 25 random sentences, he got them all right again, same as last time. This was after he read the sentences aloud before I randomly recited them. I said, "I bet tomorrow Ariel will tell you to start doing these lists without reading them first." He said, "Let's try it!" I expected he would struggle, but yet again he proved me wrong! He only missed two words out of the entire list!! Jim instead of Jeff, and Don't laugh at the little puppy instead of They'll laugh at the little puppy.
And I forgot to mention that this is all done with his eyes closed so he can't lip read. A-M-A-Z-I-N-G.
Today was the 2-week post-activation appointment. Brandt went into the sound booth for testing, this time the AZ Bio (sentences with different speakers) and CNC (one-syllable, three-phoneme words) tests that he has done in the past for evaluations. Beth warned him, "it's going to be hard today, I expect it to be hard." But for the AZ Bio sentences, he did so well that Beth told him, "You did such a great job, I'm going to make it a little harder--it's going to be softer." He still did pretty well. He didn't do as well with the CNC words, but I was really struggling to understand some of them myself. When Beth opened the door to the sound booth, she had a huge smile on her face and said, "You did great, really really awesome!"
Beth took out Brandt's scores from May, the appointment I had missed because I had no idea he was being retested (and would be approved) that day. He had previously scored 39% on the AZ Bio sentences at 60 decibels; today, he scored 76%!!! At 50 decibels, he scored 61%. Beth said that she considers "success" to be eventually scoring 80% at 50 decibels, and she "has no doubt that he will get there!" On the CNC test, in May he scored only 8% on getting the entire word correct; today he scored 38%. For the individual phonemes, he scored 31% in May and 65% today. And he was tested at 10 decibels lower today than he was in May. Beth said, "You have exceeded my expectations--and your own." Then she told us that now the focus will be more on understanding than just detecting sound. Progress!
Ariel was very excited when we met for listening therapy. When we were first walking through the parking lot to the appointment, she yelled "Hey guys!" behind us. Brandt turned and looked at her and she was very surprised that he heard her. During our appointment she said, "You don't realize the significance of your hearing me from a distance in the parking lot, but I do!" Brandt said, "Maybe I shouldn't tell you this, but I had no idea it was you or what you were saying, I just heard noise." She said, "That's fine! Just the fact that you heard me and responded at all is great! I have stood in the waiting room calling your name six times, getting closer and closer to you, and you were totally oblivious. You haven't had passive listening skills in quite a while. This is a big step."
He got ALL of the Ling-6 sounds correct, nearly all the vowel words, and all of the sentences. Ariel added rhyming words to our protocol: cat, fat, mat, bat, etc. She originally included sat but took it out, realizing that he was going to confuse fat and sat. She kept having to remind him that sat wasn't an option, because he kept hearing it instead of fat. Then she switched to a list of high-frequency sounds: fee, see, she, vee, zee, the. I thought these would be nearly impossible for him to distinguish, but he did remarkably well. Ariel and I were joking that towards the end, they all sounded exactly alike. I had no idea whether she was saying vee, zee, or the. Lastly she read some short stories about animals and asked questions about them, and again he did amazingly well.
I'm still in awe of how well this is going. I guess after five years of torment in the Gray Area, we deserved some relief.
On the list of 25 random sentences, he got them all right again, same as last time. This was after he read the sentences aloud before I randomly recited them. I said, "I bet tomorrow Ariel will tell you to start doing these lists without reading them first." He said, "Let's try it!" I expected he would struggle, but yet again he proved me wrong! He only missed two words out of the entire list!! Jim instead of Jeff, and Don't laugh at the little puppy instead of They'll laugh at the little puppy.
And I forgot to mention that this is all done with his eyes closed so he can't lip read. A-M-A-Z-I-N-G.
Today was the 2-week post-activation appointment. Brandt went into the sound booth for testing, this time the AZ Bio (sentences with different speakers) and CNC (one-syllable, three-phoneme words) tests that he has done in the past for evaluations. Beth warned him, "it's going to be hard today, I expect it to be hard." But for the AZ Bio sentences, he did so well that Beth told him, "You did such a great job, I'm going to make it a little harder--it's going to be softer." He still did pretty well. He didn't do as well with the CNC words, but I was really struggling to understand some of them myself. When Beth opened the door to the sound booth, she had a huge smile on her face and said, "You did great, really really awesome!"
Beth took out Brandt's scores from May, the appointment I had missed because I had no idea he was being retested (and would be approved) that day. He had previously scored 39% on the AZ Bio sentences at 60 decibels; today, he scored 76%!!! At 50 decibels, he scored 61%. Beth said that she considers "success" to be eventually scoring 80% at 50 decibels, and she "has no doubt that he will get there!" On the CNC test, in May he scored only 8% on getting the entire word correct; today he scored 38%. For the individual phonemes, he scored 31% in May and 65% today. And he was tested at 10 decibels lower today than he was in May. Beth said, "You have exceeded my expectations--and your own." Then she told us that now the focus will be more on understanding than just detecting sound. Progress!
Ariel was very excited when we met for listening therapy. When we were first walking through the parking lot to the appointment, she yelled "Hey guys!" behind us. Brandt turned and looked at her and she was very surprised that he heard her. During our appointment she said, "You don't realize the significance of your hearing me from a distance in the parking lot, but I do!" Brandt said, "Maybe I shouldn't tell you this, but I had no idea it was you or what you were saying, I just heard noise." She said, "That's fine! Just the fact that you heard me and responded at all is great! I have stood in the waiting room calling your name six times, getting closer and closer to you, and you were totally oblivious. You haven't had passive listening skills in quite a while. This is a big step."
He got ALL of the Ling-6 sounds correct, nearly all the vowel words, and all of the sentences. Ariel added rhyming words to our protocol: cat, fat, mat, bat, etc. She originally included sat but took it out, realizing that he was going to confuse fat and sat. She kept having to remind him that sat wasn't an option, because he kept hearing it instead of fat. Then she switched to a list of high-frequency sounds: fee, see, she, vee, zee, the. I thought these would be nearly impossible for him to distinguish, but he did remarkably well. Ariel and I were joking that towards the end, they all sounded exactly alike. I had no idea whether she was saying vee, zee, or the. Lastly she read some short stories about animals and asked questions about them, and again he did amazingly well.
I'm still in awe of how well this is going. I guess after five years of torment in the Gray Area, we deserved some relief.
Sunday, October 19, 2014
The Wait is Over: CI ACTIVATION
October 8: Activation Day
As instructed, we kept our expectations very low. The goal for activation was to be able to tell that there were sounds in the room. It would sound robotic, and he might only perceive beeps. He was going to hate it. It was going to sound horrible. It would be at least six months before he started to even tolerate it. We'd been burned too many times before, and I was definitely not going to get my hopes even remotely up this time. If it worked at all, I would be satisfied today.
We were supposed to meet with Dr. Awesome at his office so he could check the incision and clear Brandt for activation, but due to scheduling he ended up coming to the CI clinic instead. He said the incision looked great and wondered how Brandt would do with the processor, so the audiologist Beth asked if he wanted to stay for the activation. He usually doesn't but said, "Sure, I want to see how he does!" He was fresh out of surgery so he grabbed some coffee while Brandt had his residual hearing checked. Before implantation his hearing loss was 80 decibels, severe loss. Now the implanted ear is at 95-100 decibels, a profound loss. This is actually good news, because it was 50/50 whether he would have any left at all. But it was "unique" according to Beth because he only has hearing left in the middle frequencies, when usually it's the low frequencies that remain. When Dr. Awesome came back and saw the results, he said, "That is very odd...just so weird." Are we even surprised anymore that Brandt's ears are "weird"?! Beth took out the CI processor (a beautiful turquoise color called Caribbean Pirate) and gave it to Brandt to put on. The magnet wasn't strong enough so she had to add more magnets to get the cap to stick to his head. Dr. Awesome said, "I knew he'd need more magnets, his skull and scalp are really thick." They explained that as he wears the magnets, they will push down the swelling and after a few weeks he should be able to use less magnets. (Thankfully the initial swelling that had pushed his ear out went down after a few weeks and the ear returned to more or less its original position.) As Beth was preparing to activate the processor, Dr. Awesome warned him, "You're not going to like it, no adult does. Give it at least three months."
Beth started by playing a number of tones to determine if they were "soft, good, or too loud." At the first sound, Brandt jumped in his seat and I burst into tears. I was sitting behind him so I couldn't see his face, but I'm sure he grimaced. After the frequencies were all set at a comfortable level, Beth said, "Ok, it's time to turn it on!" And Brandt was suddenly hearing the sounds in the room. He said it sounded "mechanical...I can tell there's sound there, it sounds like Soundwave from Transformers" (who speaks in a monotone, computerized voice). Beth typed everything she was saying so he could understand what was going on. Dr. Awesome asked if his voice was understandable and Brandt said, "Not quite." Beth asked if he could tell the difference between speech and other sounds and he said, "Oh yes, easy." She asked if he could tell her voice and Dr. Awesome's voice apart and he said, "You're very similar." Then she asked how the sound compared to his hearing aids and he said, "I don't have the vocabulary to describe it...it doesn't sound natural." As Dr. Awesome left he said, "Remember, this is just the start, not the finish."
Beth told us that today she was only focusing on comfort, that fine-tuning would take place later on. She put five programs on the processor, each one progressively louder, explaining that "things will start sounding clearer and softer the longer you have on the processor." Brandt said, "It's already getting better as I've had it on longer. It's not great, but it's better." Beth reminded him that he needs to primarily wear only the processor for the first month, so that his brain can adapt quicker. By the time the appointment was over Brandt was already understanding speech, with just the processor, WITH HIS EYES CLOSED!! This was only an hour since activation.
Over the next day and a half, he seemed to be understanding me better than he could with his hearing aids. He would randomly close his eyes, stick his finger in his other ear, and say, "Ask me a question." I asked things like "What is your favorite color?," "When did you graduate high school?," "What did you have for breakfast?," etc. and he understood me every time. I was having to repeat myself less often than I was used to. We were stunned. He said that I still sounded robotic and monotone, but he could understand me. And surprisingly, he doesn't hate it.
October 10: Activation, Part 2
We returned to the CI clinic two days later for "Part 2" of the activation. Brandt had already moved up to the fifth (loudest) program on the processor and said the volume was comfortable. Beth asked about sounds and he said that breathing and eating are "distracting," the microwave beeping has a "lower pitch than it used to," and strangely the only sound that hasn't changed at all is our cats' water fountain.
We told Beth how well he was doing, that he could understand me even with his eyes closed and seemed to be doing better than with hearing aids. She said, "So far, this is a really good sign." But she also cautioned us to stay guarded, because we still have a LONG journey ahead. She encouraged us to talk to each other a lot so he gets more practice with communication, and for Brandt to watch television with captioning and try to focus on listening to the dialogue.
October 16: 1 Week Post-Activation
I was very anxious to see how Brandt was going to perform in the sound booth. Knowing that it takes quite a while to get all the fine-tuning done, I kept my expectations low (the theme of this month). I figured he would miss about 75% of the words. I was shocked when he correctly repeated back each of the words Beth said: mousetrap, birthday, school bus, railroad. I did a little happy dance in my seat. Then she started reading off more words, but at a lower volume. Uh-oh, I thought. He won't be able to hear any of those, they're too soft. But he proved me wrong, he got every single one again. Then she dropped the volume again. Still got them all correct. I burst into tears. The volume dropped yet again and he got about half, but it was so quiet that I had to strain to understand them. I was trying not to make any noise because I didn't want to distract him, so when Beth opened the sound booth door, I had my hand over my mouth as my shoulders shook silently. Brandt turned around to look at me and thought I was suppressing laughter. He said, "I must have done really bad if you're laughing at me." I wiped my eyes and explained that NO I wasn't laughing, I was bawling because he did so unbelievably well!
Back in Beth's office, she told us that she is "very pleased" and compared his performance from today to how he did a year ago with hearing aids. Aided, he could understand the words at 35 decibels. Today, it was 25 decibels! At only one week post-activation!!
Next, Ariel came in for listening therapy. We had already done about six months of listening therapy with his hearing aids, ending in January of this year, so we knew the drill. First we worked on Ling-6 sounds: ah, oo, ee, sh, mm, ss. Then we did a vowel word list, where the first and last sound of each word is the same and only the middle vowel is different: pit, pat, pot, put, pet, pert, putt, etc. Then we added a new exercises, a list of 25 random sentences. Brandt read the sentences and then Ariel and I took turns reciting them for him to repeat back. At this point, I was no longer surprised that he did a lot better than he had with hearing aids--but I was very very happy.
We went out to dinner after the appointment to celebrate and test how well Brandt could do in a noisy restaurant. Despite the loud jazz music playing overhead, and several loud birthday parties (involving copious amounts of alcohol) around us, he did amazingly well. I was struggling to hear him sometimes but he didn't seem to have much trouble at all. Incredible!!
October 19: 11 Days Post-Activation
Tonight we did our listening therapy homework, and I know the words "amazing" and "incredible" are being severely overused lately, but I don't know what else to call it! With the Ling-6 sounds, I recited them each three times and he only missed a total of two--that's an 89%. On the vowel word lists, he got about 85%. I'm using the same notebook to record his results now that I used for our previous, hearing aid round of listening therapy, so I can compare his results. He used to get about 50% on both the Ling-6 and vowel word lists. Definitely a major improvement! Then we did a new list of 25 random sentences and he didn't miss a single word. We both sighed with relief and awe. It's like we've been holding our breath for the past five years and now, we can finally believe that maybe it's going to be okay.
As instructed, we kept our expectations very low. The goal for activation was to be able to tell that there were sounds in the room. It would sound robotic, and he might only perceive beeps. He was going to hate it. It was going to sound horrible. It would be at least six months before he started to even tolerate it. We'd been burned too many times before, and I was definitely not going to get my hopes even remotely up this time. If it worked at all, I would be satisfied today.
We were supposed to meet with Dr. Awesome at his office so he could check the incision and clear Brandt for activation, but due to scheduling he ended up coming to the CI clinic instead. He said the incision looked great and wondered how Brandt would do with the processor, so the audiologist Beth asked if he wanted to stay for the activation. He usually doesn't but said, "Sure, I want to see how he does!" He was fresh out of surgery so he grabbed some coffee while Brandt had his residual hearing checked. Before implantation his hearing loss was 80 decibels, severe loss. Now the implanted ear is at 95-100 decibels, a profound loss. This is actually good news, because it was 50/50 whether he would have any left at all. But it was "unique" according to Beth because he only has hearing left in the middle frequencies, when usually it's the low frequencies that remain. When Dr. Awesome came back and saw the results, he said, "That is very odd...just so weird." Are we even surprised anymore that Brandt's ears are "weird"?! Beth took out the CI processor (a beautiful turquoise color called Caribbean Pirate) and gave it to Brandt to put on. The magnet wasn't strong enough so she had to add more magnets to get the cap to stick to his head. Dr. Awesome said, "I knew he'd need more magnets, his skull and scalp are really thick." They explained that as he wears the magnets, they will push down the swelling and after a few weeks he should be able to use less magnets. (Thankfully the initial swelling that had pushed his ear out went down after a few weeks and the ear returned to more or less its original position.) As Beth was preparing to activate the processor, Dr. Awesome warned him, "You're not going to like it, no adult does. Give it at least three months."
Beth started by playing a number of tones to determine if they were "soft, good, or too loud." At the first sound, Brandt jumped in his seat and I burst into tears. I was sitting behind him so I couldn't see his face, but I'm sure he grimaced. After the frequencies were all set at a comfortable level, Beth said, "Ok, it's time to turn it on!" And Brandt was suddenly hearing the sounds in the room. He said it sounded "mechanical...I can tell there's sound there, it sounds like Soundwave from Transformers" (who speaks in a monotone, computerized voice). Beth typed everything she was saying so he could understand what was going on. Dr. Awesome asked if his voice was understandable and Brandt said, "Not quite." Beth asked if he could tell the difference between speech and other sounds and he said, "Oh yes, easy." She asked if he could tell her voice and Dr. Awesome's voice apart and he said, "You're very similar." Then she asked how the sound compared to his hearing aids and he said, "I don't have the vocabulary to describe it...it doesn't sound natural." As Dr. Awesome left he said, "Remember, this is just the start, not the finish."
Beth told us that today she was only focusing on comfort, that fine-tuning would take place later on. She put five programs on the processor, each one progressively louder, explaining that "things will start sounding clearer and softer the longer you have on the processor." Brandt said, "It's already getting better as I've had it on longer. It's not great, but it's better." Beth reminded him that he needs to primarily wear only the processor for the first month, so that his brain can adapt quicker. By the time the appointment was over Brandt was already understanding speech, with just the processor, WITH HIS EYES CLOSED!! This was only an hour since activation.
Over the next day and a half, he seemed to be understanding me better than he could with his hearing aids. He would randomly close his eyes, stick his finger in his other ear, and say, "Ask me a question." I asked things like "What is your favorite color?," "When did you graduate high school?," "What did you have for breakfast?," etc. and he understood me every time. I was having to repeat myself less often than I was used to. We were stunned. He said that I still sounded robotic and monotone, but he could understand me. And surprisingly, he doesn't hate it.
October 10: Activation, Part 2
We returned to the CI clinic two days later for "Part 2" of the activation. Brandt had already moved up to the fifth (loudest) program on the processor and said the volume was comfortable. Beth asked about sounds and he said that breathing and eating are "distracting," the microwave beeping has a "lower pitch than it used to," and strangely the only sound that hasn't changed at all is our cats' water fountain.
We told Beth how well he was doing, that he could understand me even with his eyes closed and seemed to be doing better than with hearing aids. She said, "So far, this is a really good sign." But she also cautioned us to stay guarded, because we still have a LONG journey ahead. She encouraged us to talk to each other a lot so he gets more practice with communication, and for Brandt to watch television with captioning and try to focus on listening to the dialogue.
October 16: 1 Week Post-Activation
I was very anxious to see how Brandt was going to perform in the sound booth. Knowing that it takes quite a while to get all the fine-tuning done, I kept my expectations low (the theme of this month). I figured he would miss about 75% of the words. I was shocked when he correctly repeated back each of the words Beth said: mousetrap, birthday, school bus, railroad. I did a little happy dance in my seat. Then she started reading off more words, but at a lower volume. Uh-oh, I thought. He won't be able to hear any of those, they're too soft. But he proved me wrong, he got every single one again. Then she dropped the volume again. Still got them all correct. I burst into tears. The volume dropped yet again and he got about half, but it was so quiet that I had to strain to understand them. I was trying not to make any noise because I didn't want to distract him, so when Beth opened the sound booth door, I had my hand over my mouth as my shoulders shook silently. Brandt turned around to look at me and thought I was suppressing laughter. He said, "I must have done really bad if you're laughing at me." I wiped my eyes and explained that NO I wasn't laughing, I was bawling because he did so unbelievably well!
Back in Beth's office, she told us that she is "very pleased" and compared his performance from today to how he did a year ago with hearing aids. Aided, he could understand the words at 35 decibels. Today, it was 25 decibels! At only one week post-activation!!
Next, Ariel came in for listening therapy. We had already done about six months of listening therapy with his hearing aids, ending in January of this year, so we knew the drill. First we worked on Ling-6 sounds: ah, oo, ee, sh, mm, ss. Then we did a vowel word list, where the first and last sound of each word is the same and only the middle vowel is different: pit, pat, pot, put, pet, pert, putt, etc. Then we added a new exercises, a list of 25 random sentences. Brandt read the sentences and then Ariel and I took turns reciting them for him to repeat back. At this point, I was no longer surprised that he did a lot better than he had with hearing aids--but I was very very happy.
We went out to dinner after the appointment to celebrate and test how well Brandt could do in a noisy restaurant. Despite the loud jazz music playing overhead, and several loud birthday parties (involving copious amounts of alcohol) around us, he did amazingly well. I was struggling to hear him sometimes but he didn't seem to have much trouble at all. Incredible!!
October 19: 11 Days Post-Activation
Tonight we did our listening therapy homework, and I know the words "amazing" and "incredible" are being severely overused lately, but I don't know what else to call it! With the Ling-6 sounds, I recited them each three times and he only missed a total of two--that's an 89%. On the vowel word lists, he got about 85%. I'm using the same notebook to record his results now that I used for our previous, hearing aid round of listening therapy, so I can compare his results. He used to get about 50% on both the Ling-6 and vowel word lists. Definitely a major improvement! Then we did a new list of 25 random sentences and he didn't miss a single word. We both sighed with relief and awe. It's like we've been holding our breath for the past five years and now, we can finally believe that maybe it's going to be okay.
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| Advanced Bionics Naida processor in Caribbean Pirate turquoise |
Thursday, September 25, 2014
No Turning Back: CI SURGERY
In the early morning hours of September 11, we drove through the pouring rain to the hospital. I was terrified, but tried not to show it. After Brandt was called back to the OR prep room, it seemed to take ages before I was allowed to go back. I raced back once I was summoned, trying to act supportive and not at all scared out of my wits. He was hooked up to an IV, with compression socks and a strange contraption that kept squeezing his legs. Dr. Awesome briefly stopped in to talk with us, confirming which ear he was operating on and letting us know that the surgery "usually takes exactly 90 minutes." Then the anesthesiologist came in, and was very excited that this was Brandt's first time getting anesthesia. I was not so thrilled about it. They wheeled him off to surgery and I struggled to hold it together. But I didn't want to upset his parents in the waiting room, so after a few quick tears I dried my eyes and walked out of OR prep with my head high.
There was a woman sitting at a desk in the family waiting room, giving updates on patients' statuses. After we had been in the waiting room over an hour, she announced to us that Brandt's surgery had begun. I was disappointed because I thought he'd already been in surgery for a while. I restarted the 90 minute countdown in my head. I don't know how I managed to keep from driving myself crazy, especially with obnoxious soap operas playing loudly on the tv overhead, but I did. Exactly one hour after the announcement, Dr Awesome came bursting through the door with a big smile on his face. It took me so off guard that I jumped out of my seat and screamed, "Oh! You're here already!" He told us that surgery was a success, and he was glad that Brandt "has such a big head, I had plenty of room to play around in there! Much easier than the one-year-old I implanted yesterday, her entire skull could fit inside Brandt's mastoid." We thanked him profusely as he told us, "He's going to hate it for the first 3-6 months, then he'll be ok with it, at a year he'll love it, and at two years he'll be ready for another one."
Fortunately we have several friends and acquaintances with CIs, so I was able to send out e-mails with a lot of questions about the surgery and post-op. So I knew that he needed to sleep in a recliner for the first few nights, that he needed to stick to foods that aren't too chewy, sneezing was going to hurt, and they kick you out of post-op recovery a good hour before you're actually lucid enough to really be discharged. I still wasn't prepared for the state he was in when he was sent home though. He could barely talk and his speech was very slurred. Definitely still loopy. The nurse told me, "Ok, I'm going to let you get him dressed and ready now!" I told her that he obviously needed more time to recover and she said, "Nope, he's ready to go home!" I tried to argue for more time to let him become lucid but she insisted that it was time for him to leave. I had to stand him up and get him ready by myself, terrified that he was going to fall and split his heavily-bandaged head wide open. At least someone wheeled him down to the pickup area and got him in the car for me, but I was pretty angry. I drove home in our new car, only the second time I'd ever driven it, in the rain. Thankfully by the time we got home, he was getting lucid and was able to walk into the house with my help. It took awhile to get his pain medication and he was obviously hurting. He had some trouble sleeping, probably from the pain meds, and was in some pain, but he was able to get up and about much quicker than I had expected.
48 hours later, the bandages came off. The incision site wasn't too gorey, and cleaning and slathering it with Neosporin twice a day was easy. The swelling made his ear stick out a lot farther than the other ear, but I didn't say anything about it. It's starting to go down so hopefully the ear will flatten back out. Brandt had trouble moving his head in the first week, so if I needed to get his attention he had to swing his entire body towards me. I had to make sure to always talk to his left ear (which will change once he is activated, to always talking to his right ear.) He was convinced that he had some residual hearing left in the implanted ear; Dr. Awesome said he had a 50/50 chance of retaining some hearing and we would know once the bandage came off. After a few days, he wasn't so sure though. But he was confident that he could function ok at work with only one working ear, so he has been back to work after a week and a half.
We still have another two weeks before activation, and it's torturing me to have to wait this long! I'm so anxious to see what's going to happen. We're keeping our expectations very low for the first six months at least, but I'm ready to get this show on the road.
There was a woman sitting at a desk in the family waiting room, giving updates on patients' statuses. After we had been in the waiting room over an hour, she announced to us that Brandt's surgery had begun. I was disappointed because I thought he'd already been in surgery for a while. I restarted the 90 minute countdown in my head. I don't know how I managed to keep from driving myself crazy, especially with obnoxious soap operas playing loudly on the tv overhead, but I did. Exactly one hour after the announcement, Dr Awesome came bursting through the door with a big smile on his face. It took me so off guard that I jumped out of my seat and screamed, "Oh! You're here already!" He told us that surgery was a success, and he was glad that Brandt "has such a big head, I had plenty of room to play around in there! Much easier than the one-year-old I implanted yesterday, her entire skull could fit inside Brandt's mastoid." We thanked him profusely as he told us, "He's going to hate it for the first 3-6 months, then he'll be ok with it, at a year he'll love it, and at two years he'll be ready for another one."
Fortunately we have several friends and acquaintances with CIs, so I was able to send out e-mails with a lot of questions about the surgery and post-op. So I knew that he needed to sleep in a recliner for the first few nights, that he needed to stick to foods that aren't too chewy, sneezing was going to hurt, and they kick you out of post-op recovery a good hour before you're actually lucid enough to really be discharged. I still wasn't prepared for the state he was in when he was sent home though. He could barely talk and his speech was very slurred. Definitely still loopy. The nurse told me, "Ok, I'm going to let you get him dressed and ready now!" I told her that he obviously needed more time to recover and she said, "Nope, he's ready to go home!" I tried to argue for more time to let him become lucid but she insisted that it was time for him to leave. I had to stand him up and get him ready by myself, terrified that he was going to fall and split his heavily-bandaged head wide open. At least someone wheeled him down to the pickup area and got him in the car for me, but I was pretty angry. I drove home in our new car, only the second time I'd ever driven it, in the rain. Thankfully by the time we got home, he was getting lucid and was able to walk into the house with my help. It took awhile to get his pain medication and he was obviously hurting. He had some trouble sleeping, probably from the pain meds, and was in some pain, but he was able to get up and about much quicker than I had expected.
48 hours later, the bandages came off. The incision site wasn't too gorey, and cleaning and slathering it with Neosporin twice a day was easy. The swelling made his ear stick out a lot farther than the other ear, but I didn't say anything about it. It's starting to go down so hopefully the ear will flatten back out. Brandt had trouble moving his head in the first week, so if I needed to get his attention he had to swing his entire body towards me. I had to make sure to always talk to his left ear (which will change once he is activated, to always talking to his right ear.) He was convinced that he had some residual hearing left in the implanted ear; Dr. Awesome said he had a 50/50 chance of retaining some hearing and we would know once the bandage came off. After a few days, he wasn't so sure though. But he was confident that he could function ok at work with only one working ear, so he has been back to work after a week and a half.
We still have another two weeks before activation, and it's torturing me to have to wait this long! I'm so anxious to see what's going to happen. We're keeping our expectations very low for the first six months at least, but I'm ready to get this show on the road.
 |
| 1 week post-op |
Wednesday, September 3, 2014
Out of the Gray Area, Into the Fire
It still shocks me to say this, but we have officially left the Gray Area. I repeat, WE HAVE LEFT THE GRAY AREA! While I hated and resented the Gray Area, I had grown used to it. I had accepted that we would be stuck in this limbo for years, maybe forever. It was miserable and frustrating but it was what we knew. We'd resigned ourselves to it, agreed to stop talking about Cochlear Implants and evaluations and all those what if's (and yes I pretty much abandoned this blog) because it was too hard. I knew I couldn't get my hopes up yet again only to have them crushed. I couldn't go through that again. So I can't even describe the conflicted feelings I went through when everything changed a few months ago.
After the appointment with Dr. Awesome and Dr. Windsor last September,
we started working with a new audiologist, Beth, and a new speech-language
pathologist, Ariel. Like our previous team from three years ago,
Beth and Ariel thought that with a different brand of hearing aids and
extensive listening therapy, Brandt could significantly improve his speech
perception and would not need a Cochlear Implant. They felt that Oticon hearing aids have a
much better processing algorithm than his Phonaks, so they gave him a loaner
pair for an extended trial. We also
started doing listening therapy, both with Ariel and at home. Well, very long story short, six months with
the new hearing aids and listening therapy didn't help at all and our
communication was struggling more than ever.
The next theory was that he has Auditory Neuropathy, which Dr. Awesome and Dr. Windsor
had suggested last year. Beth conducted
an Auditory Brainstem Response (ABR) test, thinking that it would confirm
Neuropathy. I don't even know why we
were surprised, but the test came back as “probably no” on his right ear and
“inconclusive” on the left ear. She
retested the left ear twice and it would never cooperate.
In May, Brandt had another
appointment with Beth and Ariel. We
assumed it was just to return the loaner hearing aids, so I didn't bother going
with him. Having accepted that he wasn’t
a CI candidate and there was nothing more we could do to improve his speech
perception, we resigned ourselves to years more of struggling to
communicate. I was not at all prepared
for the text message I received an hour after he should have been home from the
appointment: “They say I am a candidate now. Want to get MRI and CT scan next.
I’m talking to their financial counselor now about insurance.” Umm,
what?! I just sat in stunned silence
for a few minutes, reading the text over and over. I thought he must have misunderstood what
they told him and cursed myself for not being there. It didn't start to sink in until he finally
got home and explained that they had retested his hearing with the Oticon
hearing aids and since he performed so much worse than ever before, he was now
eligible for a CI as long as the brain scans did not find anything abnormal. Another long story short, both scans came
back normal.
The next month, Brandt had his
appointment with Dr. Awesome. He entered
the room saying “Well, they finally approved you! All you have to do now is pick which ear and
which device you want.” Wait, hold on. ‘All’???
No. No no no. Not even close. With all due respect to Dr. Awesome—and
we respect him immensely—it’s not nearly that simple. Not anymore.
Not after years of getting our hopes up only to have them crushed, years
of emergency audiologist appointments to send back defective devices for the
umpteenth time, years of theories for how we might improve our situation that
never pan out. Years of heartache,
frustration, and disappointment. I told
Dr. Awesome that five years ago I would be jumping up and down crying happy
tears at this news, but it’s so complicated and seems so risky now, we don't
know what to think. He chuckled, having
heard this many times before apparently.
Brandt asked, “How can we know what is causing my hearing loss? And how can we know that a CI will actually
help?” Dr. Awesome said that we can't
know, his hearing loss is idiopathic
(unknown cause)—90% of hearing loss cases have an unknown cause. And there’s really no way to know if the CI
is going to help the way we want it to.
You just have to do it. Is this scary to anyone else??
Dr. Awesome said that it probably
would have been better if Brandt had been approved four years ago, because then
he wouldn't have had all this time to second-guess it. And I agree, it would have made it much
easier. There wouldn't have been a
question in my mind four years ago, I was SO sure that he would get approved
and that it was going to improve our lives immensely. I wished I could get that naiveté back, but
it’s long gone. We were weighing an option
that has the potential for high rewards, but that possibility comes with a high
risk.
So we went ahead and set the surgery date, September 11, with the understanding that we might back out at any time. Brandt chose his company--Advanced Bionics, because its technology has the most connectivity, and his ear--the right one, since it had better data from the ABR test. Then we decided to get a second opinion, because we were so on the fence about this decision. I kept saying, "flip a coin, because I seriously don't know if I want you to go through with this or not." We thought we had our CI center picked out for the second opinion, but after a series of problems over the course of 6 weeks, it fell through. We didn't know if we could get another appointment before September 11, and the next available surgery date was in November, which was not going to work with our schedule. It was 4:02 in the afternoon when I just started googling CI centers within a two-state radius and called them up. Some were already closed for the day, others didn't have appointments until late September. The first one to answer and have an appointment was UT Southwestern in Dallas. Brandt faxed his medical records to them on his way home from work, and first thing the next morning he had an appointment for August 29. Thirteen days before surgery.
We packed up and drove (and drove, and drove, and drove) to Dallas. We made it through the thick traffic and construction and got to the appointment early. First we met with an audiologist, who reviewed Brandt's tall stack of medical records: hearing tests, MRI, CT, ABR, notes from three evaluations and months of listening therapy. She didn't do any tests of her own, since we already had plenty of data. She said that she didn't think he has Neuropathy, and she thought he was a good candidate for a CI. "On paper, I think you would do pretty well with an implant...but you do have a lot to lose, so it is a crapshoot. I say go for it, if you can accept the possibility that it could or couldn't work. It probably will, but it's still a shot in the dark." This was actually much more positive than I was expecting, I honestly thought she would say something like 'Why are y'all even here, he obviously should not be a candidate and you're just going to have to suffer with hearing aids until you go deaf.' Seriously, that's what I expected. We had to wait two hours until the appointment with the otolaryngologist (I could barely eat my lunch) but it was well worth the wait! He was a very upbeat doctor with a loud, booming voice. He agreed that it doesn't sound like Neuropathy, just a "typical hereditary pattern with a dip" (which we discovered is called a "cookie bite," a term we had never heard before). He told us, "I think an implant is a good idea for you, you're within both the FDA and Medicaid criteria--and Medicaid is more stringent than the FDA. You have a much better chance to do better with a CI, because adults with progressive hearing loss do best. It's a leap of faith, but you are struggling with these hearing aids. I think you'll do very well, I say go for it!" We left the appointment in a daze, and on our long drive back home, we discussed preparations for before and after surgery.
Brandt decided, "I'm going to have to do it eventually, my hearing is just going to keep getting worse, so I might as well do it now." No more flipping coins, we were really out of that %#&*$@ Gray Area, jumping into the fire.
We packed up and drove (and drove, and drove, and drove) to Dallas. We made it through the thick traffic and construction and got to the appointment early. First we met with an audiologist, who reviewed Brandt's tall stack of medical records: hearing tests, MRI, CT, ABR, notes from three evaluations and months of listening therapy. She didn't do any tests of her own, since we already had plenty of data. She said that she didn't think he has Neuropathy, and she thought he was a good candidate for a CI. "On paper, I think you would do pretty well with an implant...but you do have a lot to lose, so it is a crapshoot. I say go for it, if you can accept the possibility that it could or couldn't work. It probably will, but it's still a shot in the dark." This was actually much more positive than I was expecting, I honestly thought she would say something like 'Why are y'all even here, he obviously should not be a candidate and you're just going to have to suffer with hearing aids until you go deaf.' Seriously, that's what I expected. We had to wait two hours until the appointment with the otolaryngologist (I could barely eat my lunch) but it was well worth the wait! He was a very upbeat doctor with a loud, booming voice. He agreed that it doesn't sound like Neuropathy, just a "typical hereditary pattern with a dip" (which we discovered is called a "cookie bite," a term we had never heard before). He told us, "I think an implant is a good idea for you, you're within both the FDA and Medicaid criteria--and Medicaid is more stringent than the FDA. You have a much better chance to do better with a CI, because adults with progressive hearing loss do best. It's a leap of faith, but you are struggling with these hearing aids. I think you'll do very well, I say go for it!" We left the appointment in a daze, and on our long drive back home, we discussed preparations for before and after surgery.
Brandt decided, "I'm going to have to do it eventually, my hearing is just going to keep getting worse, so I might as well do it now." No more flipping coins, we were really out of that %#&*$@ Gray Area, jumping into the fire.
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